Scheduled For Cystectomy-Terrified!

Posted by Parus @parus, May 31, 2019

I was not at all concerned about this procedure until pre-op called from hospital. The PA made it sound like no big deal and I scheduled a ride. They now tell me I need someone with me for 24 hours after the out patient procedure. If I don't have someone with me then I cannot have the procedure and live with passing blood clots and blood in my urine in hopes the clots will keep passing through. The procedure was presented as simple and quick. I don't know what to do as there is no one to stay with me. Really scared now!! Likely will cancel.

@parus Are you having a bladder cystectomy, where bladder is removed? That doesn't seem like an out-patient procedure. What about speaking with the facility and get their thoughts? Can you stay overnight in the hospital, If insurance will cover it, or a rehabilitation center? Do you have a trusted person who could stay with you, or would your son invite you to stay at his place? Want me to fly back and stay with you? Sending hugs,
Ginger

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@parus I hate being put in these positions I'm so sorry for this .It is a decision when it's your body I pray you make the right one. Ask like Ginger said it you can stay in the hospital talk with your Dr.Ask him Let us know how your doing Cyber bugs to you .

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@gingerw Seems they have hired some outside company for registration and I am not the only patient being terrified. I did call the office where the procedure is being done and they assured me it is a simple procedure and having someone with me afterwards is not required. Various doctors are not pleased with having their patients told they are having the wrong procedure. It will not be necessary to fly back to sit with me.
Have you started working towards being a CZT. This is so exciting even from where I sit.

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@lioness

@parus I hate being put in these positions I'm so sorry for this .It is a decision when it's your body I pray you make the right one. Ask like Ginger said it you can stay in the hospital talk with your Dr.Ask him Let us know how your doing Cyber bugs to you .

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@lioness Thank you. Things are straightened out now. Geesh, the fear that the ignorance of others can cause. What a mess. Now to get myself calmed back down.

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@parus What a relief for you Always better to listen and talk to your Dr .That scared me I was wondering what kind of procedure would need someone to sit with them ,all the time I worked in the O.F with all kinds of surgery never required anyone to sit with them. Glad you feel better .

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@parus

@lioness Thank you. Things are straightened out now. Geesh, the fear that the ignorance of others can cause. What a mess. Now to get myself calmed back down.

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@parus have a cuppa tea listen to music that always helps me

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@parus

@gingerw Seems they have hired some outside company for registration and I am not the only patient being terrified. I did call the office where the procedure is being done and they assured me it is a simple procedure and having someone with me afterwards is not required. Various doctors are not pleased with having their patients told they are having the wrong procedure. It will not be necessary to fly back to sit with me.
Have you started working towards being a CZT. This is so exciting even from where I sit.

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@parus So glad to hear it is those silly people "awfulizing" the procedure. Those Dr's need to get a more compassionate company! I leave in two weeks from today for the training. Doing as much Zentangling as I can before that to practice.
Ginger

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DEAR PARUS, THERE WAS NO ONE MORE SCARE THAN ME. I HAD TO HAVE A PROLAPSE (TOTAL, INCLUDING BLADDER & RECTAL) LIFT, WAS LVIING WITH IT FOR 6 YEARS. I COULD NOT OVERCOME MY FEAR BCAUSE I TOO LIVE ALONE AND HAD TO HAVE SOMEONE WITH ME FOR A COUPLE OF DAYS AFTEWARDS.. I REALLY WORKED MYSELF INTO STATE. SO I WAS RESOURCEFUL, FOUND AFRIEND WHO NEEDED SOME MONEY AND PAID HER A SMALL AMOUNT FROM MY SAVINGS TO STAY WITH ME FOR A FEW DAYS AFTERWARDS. KNOWING I HAD SOMEONE TO BE THERE MADE ME GO THROUGH WITH IT. DON'T CANCEL!! I DONT KNOW WHAT YOUR PROCEDURE IS BUT PROBABLY SOMETHING SIMILIAR (THESE WOMEN ISSUES AR ALL CENTERED AROUND THE SAME PARTS OF THE BODY. I DID IT! AND I AM O.K. MADE IT THROUGH. U CAN E-MAIL ANYTIME AND I WILL TRY TO GIVE U SOME COURAGE FROM THE LITTLE I FOUND TO DO THIS. U WILL BE MUCH HAPPIER THAN HAVING BLOOD, CLOTS AND DISCOMFORT FOR THE REST OF YOUR LIFE. BELIEVE ME, MY ANXIETY IN LIFE IS GENERALLY A 9 MOST OF THE TIME. DO WHATEVER U NEED TO GET U THROUGH IT. GOOD LUCK AND BE WELL! GGM

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@parus I presume this is a cyst removal if it's an outpatient procedure. I am glad you were able to get things straightened out, I can understand how the misinformation must have been very frightening. When you are having the procedure?
JK

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@parus

@gingerw Seems they have hired some outside company for registration and I am not the only patient being terrified. I did call the office where the procedure is being done and they assured me it is a simple procedure and having someone with me afterwards is not required. Various doctors are not pleased with having their patients told they are having the wrong procedure. It will not be necessary to fly back to sit with me.
Have you started working towards being a CZT. This is so exciting even from where I sit.

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I'm so sorry that you had to go through that anxiety, @parus! I am so glad that you called the office and that you were reassured that the situation was not bleak!

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Well, I was told that the procedure was outpatient. It was only for the removal of a polyp. Well, I was sent home with papers telling me I have active bladder cancer. Is this how things are now done. I went in believing it was to have the one discovered removed and then to be checked. The discharge papers said otherwise. I was also told to make a follow-up appointment with the Urologist for the results. Must have been really bad once they went in to remove it. I am getting to the point I no longer want to go to doctors. Why bother if the polyp removed was so bad I am going to die anyway? They just want more money to torture me even more!!!
There is no longer compassion in the medical world I have experienced. I have tried to contact the office and no one has returned my call. Must be too bad to mess with.

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@parus

Well, I was told that the procedure was outpatient. It was only for the removal of a polyp. Well, I was sent home with papers telling me I have active bladder cancer. Is this how things are now done. I went in believing it was to have the one discovered removed and then to be checked. The discharge papers said otherwise. I was also told to make a follow-up appointment with the Urologist for the results. Must have been really bad once they went in to remove it. I am getting to the point I no longer want to go to doctors. Why bother if the polyp removed was so bad I am going to die anyway? They just want more money to torture me even more!!!
There is no longer compassion in the medical world I have experienced. I have tried to contact the office and no one has returned my call. Must be too bad to mess with.

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@parus
As a three-time cancer survivor, I understand what a shock to learn that a simple polyp was active cancer. I know you must be very distressed, I'm sure all of us would be. Sometimes it is hard to tell cancerous polyps from benign until it is removed. I'm supposing this is the problem you have experienced.

Some medical professionals do show compassion but some of them are just good at their skills but not so good with relationships. It sounds like your doctor was the latter.

Give the office another day or so, perhaps they are waiting for the final biopsy results in order to stage the cancer cells.

How are you feeling today? Are you dealing with a lot of discomfort? Praying for your body and emotions to settle and adjust.

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@parus

Well, I was told that the procedure was outpatient. It was only for the removal of a polyp. Well, I was sent home with papers telling me I have active bladder cancer. Is this how things are now done. I went in believing it was to have the one discovered removed and then to be checked. The discharge papers said otherwise. I was also told to make a follow-up appointment with the Urologist for the results. Must have been really bad once they went in to remove it. I am getting to the point I no longer want to go to doctors. Why bother if the polyp removed was so bad I am going to die anyway? They just want more money to torture me even more!!!
There is no longer compassion in the medical world I have experienced. I have tried to contact the office and no one has returned my call. Must be too bad to mess with.

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@parus I am so sorry to hear the way they treated you. I had a similar treatment on some diagnoses, and can relate to what you may be feeling right now. As @hopeful33250 suggested, give them a day or two to gather all their facts to relate to you. Please give them the benefit of the doubt. After you have the information, you can explain how they handled it made you feel. It may help someone else down the line. I will be thinking of you, and hope you let us know how you are doing?
Ginger

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@hopeful33250

@parus
As a three-time cancer survivor, I understand what a shock to learn that a simple polyp was active cancer. I know you must be very distressed, I'm sure all of us would be. Sometimes it is hard to tell cancerous polyps from benign until it is removed. I'm supposing this is the problem you have experienced.

Some medical professionals do show compassion but some of them are just good at their skills but not so good with relationships. It sounds like your doctor was the latter.

Give the office another day or so, perhaps they are waiting for the final biopsy results in order to stage the cancer cells.

How are you feeling today? Are you dealing with a lot of discomfort? Praying for your body and emotions to settle and adjust.

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@hopeful33250 Oh gee, I guess I just need to talk to Jesus.

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@parus

@hopeful33250 Oh gee, I guess I just need to talk to Jesus.

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Hi @parus,

I'm not quite sure what feelings were behind your post when you said, "Oh gee, I guess I just need to talk to Jesus", but you probably do need to talk with someone you trust about your fears and anxieties right now. Cancer has a way of bringing up feelings of catastrophe, which usually are not real. I think that right now you are assuming the worst-case scenario since you said,

"I have tried to contact the office and no one has returned my call. Must be too bad to mess with." That is probably not the case, they just need more time for the complete biopsy results.

When I had my third diagnosis of neuroendocrine cancer, I was devastated. It had been 11 years since my last surgery and many doctors told me it would probably not return again. so I know my mind went in a lot of "what-if" directions. After three years I still do a minor panic when I have to be tested for recurrence however, so far, so good.

Wishing you peace of mind, even for just a few minutes at a time. Is there anyone you can talk with right now? If not in person, please know that we are here to listen to you.

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